Hi,
I'm new to this forum and joined because I've never felt so conflicted or confused and I'm hoping to hear from anyone who could offer advice or info on their own experience.I'll try to keep this brief but hopefully with enough detail. I've summed up at the end!
I was diagnosed with Crohns earlier this year. I was first investigated a few years before this- told no Crohns but now looks as though it was missed. Symptoms then alternating constipation and diarrhoea, hospital admission with suspected appendicitis then query ovarian cyst, no diagnosis and now appears that pain was likely crohns. Investigated, not found, told had IBS. Fast forward a few years- episode of ongoing diarrhoea for a few weeks, re-referred by GP, ix for crohns and diagnosed. Other than that episode, again symptoms are more constipation that diarrhoea.
So, Crohns diagnosed on colonoscopy, is in teminal ileum. Started on steroids for 3month. MRI showed stricture and possible fistula going to sigmoid colon.
Surgeon however says in his experience often fistula is not actually there (not entirely sure what is seen on the MRI if not a fistula) and he seems more concerned by the stricture. Currently managing stricture with low fibre diet avoiding skins, pips, stalks, nuts etc.
Treatment discussed with consultant and surgeon. Was told could try medical options- Azathioprine escalating to Inflixmab. Told, however, this is unlikely to help with the stricture as it doesn't help with fibrosis. Surgical- offered ileocaecal resection. Consultant doesn't seem to mind which choice I pick but both IBD nurse and surgeon reckon surgery is the best option.
This is where the conflict comes in, and if anyone can please help me I would be so grateful. Currently, on the whole, I feel quite well. I do get pain sometimes but it is manageable and passes, I've needed to leave work once since diagnosis. It is not the frequent, debilitating pain I read about others suffering. I do feel bloated and sluggish but I'm trying to manage this with diet. I am really tired but my Vit D and ferritin are both woefully low, both being treated and I'm beginning to feel less tired although do have days where I am shattered. I sometimes but not often suffer from diarrhoea, constipation has been more of a symptom for me. Fine balancing act currently with low fibre diet for stricture and avoiding further constipation.
I am terrified of having a resection and developing bile acid malabsorption. I've been told I will certainly have diarrhoea after surgery and they will aim to treat this with Questran and loperamide if needed (I'm in the UK). I am scared of the urgency and possible incontinence that I may have. To me, this would ruin my life and would be worse than anything I put up with now. Surgeon and IBD nurse recommend surgery while I am well however as I'm more likely to heal well and recover faster. I, on the other hand, am struggling to understand why I'd risk my current quality of life. There is a small chance that if previously mentioned fistula is there, I will need a temporary stoma- small chance so I'm not too concerned about that, it's the definite consequence of diarrhoea I am afraid of. And the 3 months on antibiotics, the lifelong meds after, the high chance of recurrence. I am currently due for surgery in a couple of month. I'm considering cancelling and instead trying meds to try to stop the stricture worsening.
Sorry this is so long. To sum up: Have a stricture but feeling quite well. Is surgery really the best option? I feel I may be swapping one lot of problems for another. Has anyone else felt like me? Anyone had a stricture but felt quite well?
Thank you for reading x
I'm new to this forum and joined because I've never felt so conflicted or confused and I'm hoping to hear from anyone who could offer advice or info on their own experience.I'll try to keep this brief but hopefully with enough detail. I've summed up at the end!
I was diagnosed with Crohns earlier this year. I was first investigated a few years before this- told no Crohns but now looks as though it was missed. Symptoms then alternating constipation and diarrhoea, hospital admission with suspected appendicitis then query ovarian cyst, no diagnosis and now appears that pain was likely crohns. Investigated, not found, told had IBS. Fast forward a few years- episode of ongoing diarrhoea for a few weeks, re-referred by GP, ix for crohns and diagnosed. Other than that episode, again symptoms are more constipation that diarrhoea.
So, Crohns diagnosed on colonoscopy, is in teminal ileum. Started on steroids for 3month. MRI showed stricture and possible fistula going to sigmoid colon.
Surgeon however says in his experience often fistula is not actually there (not entirely sure what is seen on the MRI if not a fistula) and he seems more concerned by the stricture. Currently managing stricture with low fibre diet avoiding skins, pips, stalks, nuts etc.
Treatment discussed with consultant and surgeon. Was told could try medical options- Azathioprine escalating to Inflixmab. Told, however, this is unlikely to help with the stricture as it doesn't help with fibrosis. Surgical- offered ileocaecal resection. Consultant doesn't seem to mind which choice I pick but both IBD nurse and surgeon reckon surgery is the best option.
This is where the conflict comes in, and if anyone can please help me I would be so grateful. Currently, on the whole, I feel quite well. I do get pain sometimes but it is manageable and passes, I've needed to leave work once since diagnosis. It is not the frequent, debilitating pain I read about others suffering. I do feel bloated and sluggish but I'm trying to manage this with diet. I am really tired but my Vit D and ferritin are both woefully low, both being treated and I'm beginning to feel less tired although do have days where I am shattered. I sometimes but not often suffer from diarrhoea, constipation has been more of a symptom for me. Fine balancing act currently with low fibre diet for stricture and avoiding further constipation.
I am terrified of having a resection and developing bile acid malabsorption. I've been told I will certainly have diarrhoea after surgery and they will aim to treat this with Questran and loperamide if needed (I'm in the UK). I am scared of the urgency and possible incontinence that I may have. To me, this would ruin my life and would be worse than anything I put up with now. Surgeon and IBD nurse recommend surgery while I am well however as I'm more likely to heal well and recover faster. I, on the other hand, am struggling to understand why I'd risk my current quality of life. There is a small chance that if previously mentioned fistula is there, I will need a temporary stoma- small chance so I'm not too concerned about that, it's the definite consequence of diarrhoea I am afraid of. And the 3 months on antibiotics, the lifelong meds after, the high chance of recurrence. I am currently due for surgery in a couple of month. I'm considering cancelling and instead trying meds to try to stop the stricture worsening.
Sorry this is so long. To sum up: Have a stricture but feeling quite well. Is surgery really the best option? I feel I may be swapping one lot of problems for another. Has anyone else felt like me? Anyone had a stricture but felt quite well?
Thank you for reading x
Thanks for talking about balloon dialation, as this is the first time I have ever heard of it and I also have inflammation and a stricture in my terminal ileum. My GI mentioned surgery twice, even before I started Humira and 6mp !! My doctor NEVER mentioned balloon dialation as an option. Good health and happiness to everyone. 
